Wednesday, October 31, 2007

Better Late Than Never!

It has now been almost three weeks since I last wrote and I know that there are probably a few people who are not too happy about that. I have found it very difficult to write lately. I can make excuses I guess but to be honest the main reason I have not been writing is that I am trying to do whatever I can to act as if we have already won the battle against ADA deficiency. The battle is far from over and even further from being won but I try to do whatever I can to be as normal as any other family.

I have been off from work for over a year now and with everything we have gone through I want normality. I have not written my exam yet but am scheduling it for either this Friday or Monday. Once that is done, I hope to find a position shortly after. It will be nice to actually have an income once again. As you can imagine, the financial stresses that come with this disease have been overwhelming at times. That said, we are extremely appreciative of everything that people have done for us to ease that burden. We have had a couple of people who have offered to do a fundraiser for us and we really appreciate this. It will definitely be much easier for us if we can somehow try to eliminate some of the financial stress when there are so many other stressful things to deal with as well. Although I am planning to go back to work soon, a return date for my wife remains unknown until we see Parker's numbers reaching a stable level. I know how much my wife would love to return to her teaching job, but it is a difficult profession for someone who has a son who is severely immune compromised.

Now, that I have gotten all of my whining out of the way I shall update everyone on how things have been for us the past three weeks. I shall do it in the fashion that many of you have become accustomed to lately and break the article down into subheadings.

Parker's Neutrophils and Lymphocytes
I figured that I should begin with the most important. I had mentioned that Parker's neutrophils had dropped the last time I wrote to under 1000. We had hoped that when we made our next visit to Sick Kid's we would see a correction and Parker's neutrophils would have increased to over 1000 again. Unfortunately, that was not the case. We shocked when Parker's blood came back just over a week ago and his neutrophil count was 640. Shocked enough that we actually went to speak with Parker's immunologist at Sick Kids.

No one really knows why Parker's neutrophils dropped. I am confident that it does not have to do with his metabolites or his engraftment but that does not mean that the doctors do. I had emailed the doctor in Italy and he agreed that he was not worried but did want Parker's blood tested again this past Friday. Parker's neutrophils had increased slightly to 750. Now, this was not exactly the increase we were hoping but at least they had not dropped for a fourth consecutive time. We are not scheduled for another test until a week yesterday so we just sit back and pray that his numbers increase again.

The good thing is that Parker's lymphocytes increased. The last two test had them at around 400. This is very encouraging and much higher than we had anticipated at this time. The lymphocyte count can fluctuate quite abit so we may see them drop again on Monday.

Our Attempt at the Toronto Zoo
We decided to get a pass to the zoo so that we could do something with Parker that we thought we all could enjoy. On Sunday, we made our first attempt at going to see the animals but after about 15 minutes it started to rain and we figured we should call it quits and come home.

Then, on Monday, we figured it was a nice day and we should once again try and go to the zoo. First, we had to make a trip to my parents to pick up some clamps so we could repair a door that Parker had broken. Just prior to pulling out of my Parent's driveway I noticed that one of my tires had gone flat. So, after replacing the tire with the donut I had in the trunk we spent the rest of the morning getting the tire repaired instead of going to the zoo.

Yesterday, as we pulled into the zoo parking lot we realised that we had not brought Parker's stroller and that without it it would be a very difficult morning at the zoo. That said, we were determined to go to the zoo, so we just went home to get his stroller.

I would like to say that Parker was amazed at the animals, but he was not. For almost two hours we pushed him around the zoo showing him the elephants, tigers and giraffes. But all that Parker was interested in was looking at the leaves we rolled over while pushing him in the stroller.

Close to the time that we left, we decided we should let him walk around for a bit. Parker loved it. Leaf after leaf he picked up and through into the wind. Unfortunately for him, we had to pick him up so he could go home for his nap. The little monkey cried and cried as I carried him under my arm to the car. Every once in a while, as we passed a leaf I would stop and lower him so he could pick it up. By the time we got to the parking lot the leaves were gone and we faced the task of trying to get our upset son into his car seat. Everyone who saw him must have thought he really loved the zoo.

Coffee Time!
This morning Parker decided that he would also like to have some coffee with daddy. As I mentioned several times, Parker is one quick little monkey. This morning I had turned around for one second only to see Parker grab my coffee mug and dump it all over our cashmere coloured carpet in our bedroom. I quickly called Tracy and told her that she needed to grab the little guy so that I could begin cleaning up the mess he had created. I have now tried a couple of times to scrub the area clean, but there is still a definite finishing touch to our carpet now!

We would like to wish everyone a very safe and happy halloween. We are planning to take Parker to a few houses so that some of our family and friends may see the little guy in his extremely cute costume. Parker's costume is very fitting for what we always refer to him as- our little monkey!

Happy Halloween Everyone!


nonna said...

Hey Paker!

So nice that you were able to come out for Halloween. What a great memory we were able to build, just the start of many more. You were so cute as a little monkey,running to the houses and knocking. Nonno and Nonna feel so blessed to have 5 Handsome boys.
Stay strong big guy.


Nonno & Nonna

Auntie Natalie said...

Oh Parker Pants,

You are such a quick little monkey...dumping your daddys cup of coffee on the carpet. I learned first hand how fast you were the last time I saw you. My goodness you are keeping everyone on their toes!

I am so glad that you are enjoying the fall leaves. They are fun to play with!

please tell your Mommy and Daddy that they are in my thoughts each and every day...I love all three of you oodles and oodles!

Auntie Natalie